My autism diagnosis, one year on: what I was not warned about.

Photo by Emily Underworld on Unsplash

It’s been a year since I received my autism diagnosis, and a lot has changed since then. Firstly, I’m no longer living in Singapore and have relocated back to the UK. What’s more, I’m no longer a teacher. In fact, I’m now a psychology postgraduate student and work in Diversity & Inclusion. One change that I was anticipating and perhaps a little naively, is that my diagnosis would be a magic key to getting the support I needed — this hasn’t quite gone to plan.

When I received my autism diagnosis in November 2020, I was full of optimism. I was proud, confident in my own skin and excited to begin advocating for people like me. I jumped at the chance to appear on two podcasts and felt at ease talking about being autistic. I volunteered to be a mentor for other autistic people, guiding them through the diagnostic process and navigating this complicated neurotypical world. I even mustered up the courage to challenge workplace discrimination and deliver talks to organisations about being autistic in the workplace. I felt like I could conquer the world, or a least chip away at some of the everyday ableism that autistic people encounter. This was until I started university. So, if you’re starting university thinking that your shiny new autism diagnosis will make life easier, you’re not entirely wrong. However, understand that you are going to face some challenging situations.

Not everyone is going to know what ‘autism’ actually is.

I thought that wearing a sunflower lanyard around campus and dropping that I’m autistic casually into conversations would help me side-step discrimination. I was wrong. People will enthusiastically announce that they have heard of autism (five points to Gryffindor!). They may even refer to a sibling or a friend of a friend who “has it”. Some will say that they studied it as part of their psychology degree and are now autism experts. While I acknowledge that this is to make us feel comfortable about opening up to them, they do not have the lived experience that we have and therefore will not understand the tiny nuances that come with being an autistic person. We shouldn’t expect that everyone we encounter will understand how to talk about autism in the same way we do. However, I did expect university disability support staff, who are supposed to have expert knowledge of autism, to know about my needs and experiences. It pains me to say that this was far from the truth.

Advocating for yourself will be a full-time job, whether you like it or not.

Social justice is something that gets me out of bed in the morning (that and a cup of coffee), but I did not expect it to take over my life. You will have needs that are not going to be met by support staff or professors: no matter how ‘knowledgeable’ they claim to be about disability and neurodiversity. You are probably going to take time out of your busy day to set up meetings with staff to explain your experiences and ask for more accommodations. You will be gaslit by services who claim that they have provided all the proper support, when in fact they just roll out the same cookie-cutter services for all disabled students, crossing their fingers that some might be useful. You will be firing off emails to this support person and that support person with no resolution. Yes, some of these opportunities to advocate for ourselves can build resilience and confidence but do also expect a lot of burn out. I must constantly remind myself that I am paying £11,000 to study Psychology; not to train staff about autism. There are issues that can be resolved with a meeting and speaking about my lived experience, but there are some that are just too big for us to handle and that’s okay. Nor is it our job to fix these structural problems all by ourselves.

The imposter syndrome will hit…and so will past trauma.

Despite knowing that I was smart enough to pass an entrance exam for my postgraduate course. Despite knowing that I have a knack for writing essays and studying for exams, I still feel like I don’t belong at university because I am autistic. I tell myself not to compare myself to others, yet it is so tempting to do so when I’m surrounded by my neurotypical peers five days a week. I have contemplated the idea of withdrawing from my course twice because I have this belief that my brain is just not cut out for a Master’s degree. This, coupled with misunderstandings among peers and lecturers who believe that my needs are ‘unreasonable’ has brought back workplace trauma that I experienced when I was told that I just wasn’t good enough for the job.

This post isn’t to deter late-diagnosed autistic people from following our passions or advocating for ourselves. I am setting the expectation that it’s not going to be easy. But I do believe that it is absolutely our right to ask for accommodations and let people know if these accommodations are not working for us. I’m also a firm believer in educating others about being autistic, although not to the detriment of our mental health. I’m hoping that my involvement in Diversity & Inclusion for my university’s psychology department will create some much-needed change in higher education for neurodivergent students. We do belong at university. Not so we can conveniently do diversity and inclusion work, but because we choose to be here.

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Psychology postgraduate student. Autistic. Advocating for neurodiversity acceptance.

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Sophie Longley

Sophie Longley

Psychology postgraduate student. Autistic. Advocating for neurodiversity acceptance.

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